Guest Post: After an Open Letter the JDRF Opens Up – Part I

This week, Chris and I are attending the Toronto Film Festival, where Buried will be screening tomorrow night. While I'm away in the lovely (and frigging cold) Canada, I have some fellow PWDs who have offered to guest post. Today's post comes from longtime type 1'er, Scott Strange, who wanted to share his discussion with the JDRF Grassroots Advocacy Program. Below, you'll find Part I of his three part series, so be sure to check out his blog at Strangely Diabetic for the full story!

Take it away, Scott!

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First off, I would like to thank Kerri for the opportunity to be a guest blogger here on Six Until Me. Kerri was one of the first D-bloggers I “found” when I started discovering the DOC, so this is really is quite an honor for me. I swear there were times when my feet felt swollen…

Recently, I wrote An Open Letter to the JDRF where I was pretty critical of the organization and it’s apparent attitude toward adult Type 1 community, especially those of us who had been out here the longest. Replies to my post mostly showed agreement with what I was saying, but also showed that the amount of T1 “support” varied from local chapter to local chapter.

I had a reply from a member of the KC Chapter’s Board of Directors. We had dinner one evening at a local BBQ place and he filled me in on the local adult efforts going on which sound very interesting and I’m excited to start participating in locally.

I also had an offer of a phone interview with Mike Kondratick, who is based in Washington, DC and is the Director of the JDRF Grassroots Advocacy program. He is part of the Government Relations Office and, as such, tends to deal strictly with raising money from the public sector; whereas the local branches focus on private sector fund-raising.

First, a little background on what the Government Relations Office, and local advocates from all over the country, make happen through meetings with federal legislators. The general appropriation to the National Institute of Health (NIH), as directed by Congress, for all disease research is about $29B annually. T1-specific research sees about $283M of the $2B allocated for all diabetes research. Through the Special Diabetes Program (SDP), another $150M is allocated every year, bringing the T1-specific research funding total to about $433M annually. The local Chapters raised nearly $100M in 2009 with about 80% dedicated to funding research.

The Government Relations Office has 13 staffers, including two T1’s and the mom of a child with T1. They are a pretty small staff compared to some other “big ticket” disease organizations. Thus, they try to take the “squeaky wheel gets the grease” approach to get in front of legislators as often as possible, with as many people telling their story as possible.

Also managed out of that office is the Artificial Pancreas Project (APP). Many of the roadblocks facing the APP are regulatory ones, so it is a good match. Personally, I believe that the APP is a very important, if not critical, slice of the diabetes management pie. Let’s face it; we are not going to see a T1 cure any time soon and getting a medical device approved can be a much quicker process, in theory at least. The better control we are able to establish, the longer we can put off complications and the better off we are. When you look at the costs of treating complications years down the road; the savings to the healthcare system could be enormous, not to mention the potential increase in the quality of our lives.

I asked what role he sees for adult T1’s in the JDRF Grassroots Advocacy arena. The goal is to get as many them in front of lawmakers as often telling their stories of how diabetes affects their lives. The JDRF is really very small compared to other groups such as cancer and heart disease and basically “competing” for the same research funding, so they try to become the “squeaky wheel” by putting T1’s in front of lawmakers, usually at their local office. This allows a highly personalized message to be delivered, one that the lawmakers tend to remember.

The JDRF Children’s Congress is held every other year and is really designed to be a big media event; putting children and their families in front of lawmakers at Congressional Hearings. The adult T1s that are there are usually celebrities and the JDRF uses their fame to bring additional attention to Type 1 diabetes. It is also important that the children with diabetes (CWD) see these celebrities and can maybe gain some inspiration from them. Now the only issue I have with this is that celebrities often don’t have the same financial restrictions placed upon them as the vast majority of T1s. They may have someone on the payroll whose job is to make sure their condition is properly managed. They don’t worry about the cost of test strips or insulin. This, in my opinion, presents a pretty skewed picture of the actual affects of diabetes on adults to the media. Hopefully, lawmakers have spoken to enough adults to see the difference, but honestly look at the myths that are out there. Media really hasn’t caught on and we need to change that.

They try to organize two to three events every year to get advocates of all types in front of lawmakers at both the federal and local levels. The meetings back in their home districts tend to be more impactful as they are usually more one-on-one and they’ve been very successful in making sure that the legislators remember these meetings. But to accomplish this, they need people at the local level willing to tell their stories; and at the end of the day, these stories are just as impactful as the stories of children and their parents. Every other year, the JDRF also runs a program called The Promise Campaign that is specifically designed to facilitate these meetings.

Mike sees two main groups of adults involved with the JDRF’s advocacy activities. 1) people, often parents soon after diagnosis, that invest themselves quite heavily in the JDRF’s research- and cure-focused messaging and advocacy and 2) adult T1s.

Before the APP, there was really a limited stream of messaging to adult T1s. The JDRF didn’t tell a coherent story about how the things they did helped improve people’s lives on a daily basis. Their story was about what will hopefully happen at some future point in time. This may be a very key point in the “rift” between JDRF and adult T1s. The JDRF is laser focused on fundraising for research and a “quantifiable” result for them may be just learning something that can help find the cure. But as a T1 myself, that result is pretty much meaningless as far as things go on a daily basis. To me “quantifiable = hands on”, when can I get one?

One of my frustrations with the JDRF was that the messages I did receive always “wanted” something; but what was I getting out of the deal? I could never find an answer to that question. As I bemoaned earlier, the Spring 2010 newsletter for the Kansas City Branch had an article about having a local T1 get together, but absolutely no mechanism for finding out more, not even a clue where to check. I see a lot of us, not the JDRF, out here trying to do this on our own, providing the type of support that we, as long term adult T1s need and answering those who are asking for help.

This is where Mike sees great opportunity to improve communications between the JDRF and the adult T1 community. They basically haven’t been focused enough on reaching out to the adult T1 audience, looking for ways both can benefit from a partnership. Besides financial contributions, there is so much additional information out there that a collaborative approach could greatly benefit all. They are currently weak in this area, but Mike believes that steps are being taken to improve this and thinks we should be able to see some measureable improvement by this time next year. But still, he recognizes that doesn’t excuse the fact that the JDRF hasn’t performed well in this area previously.

The JDRF is moving to a more collaborative approach than they have had before; talk “to” people, not “at” them. They can’t reach the goals they want to reach without people feeling more motivated to stay engaged at the local level, not necessarily just with the local chapter itself, but locally as a group of advocates to get things done. This is where the Grass Roots Advocacy program comes into play.

Comments

AMEN! This actually fired me up to write a post of my own! It's something that I've been thinking about and grumbling over for a long time but never had the urge to speak out! Thanks for the inspiration and good luck with all your efforts!

I understand the feeling that JDRF is detached from living with diabetes, I know others who have felt the same way. I recently contacted the local JDRF office about group meetings and found them to be unreceptive.

I asked if they would like to participate with a group that was starting up. Would they be interested in talking and could forward a notice about a meeting to their contacts. The reply came down to it is walk season and their communication schedule was full.

Scott, thank you for a detailed update on what you learned from JDRF. Personally, the only bit of research that they've funded that may help me is the APP. There may be other research, but they're doing a lousy job at telling us about it.

I know from visiting Capitol Hill in the past that you have to be a really squeaky wheel to get any attention. I'd like JDRF to organize more opportunities to talk with our legislators. I may not be as cute as a 6 or 8 year old with diabetes, but I can explain clearly what the long term issues are with this disease. I look forward to part 2 of your post.

This is so interesting! What a great guest post Kerri! Scott summed up and asked a lot of unanswerable questions regarding "older" T1 (I use that phrase loosely as I'm in my twenties). But either way, he is right in so many aspects. I feel that as a grassroots campaign (which JDRF is attempting to do at a local level. and for the most part, they are doing it well), there needs to be less formal "meet ups" that aren't very organized and more advocacy. Unless a meet up constitutes advocacy (which I suppose it does). Anyway, I'm rambling. I'm basically commenting that the grassroots movement for JDRF involves a lot of hoops to get over and at the end of the day, its not going to help me pay the astronomical price for my pump supplies, insulin, and strips (with insurance). I've been to only 1 meet up in the past year and finding how to organize it is like pulling teeth.

The JDRF needs to make this a priority from the top, otherwise local chapters see it as a lower priority than other activities. My only concern is that some chapters have no interest in adults with type 1, as the NYC chapter is such painful evidence of. When this happens, then adults with type 1 need to be willing to take their fundraising to chapters that are willing to provide reciprocal support for adults with type 1. I am considering working with suburban chapters in Westchester County, NY or Long Island, NY given the cold reception I got from the NYC chapter. It would be interesting to see how the tune would change if competition for our support was at stake!

As an adult with late onset T1 for only a few years, diagnosis left me with resources that weren't really suited to my needs. My questions were about how to make management fit into a life that includes graduate school, work, and the relationships that characterize the life of a young adult. I was only able to find support for T2s, which focused mainly on losing weight, and the JDRF meetings, where I had more in common with parents than with the kids. I still seek support groups in my area, but have found little out there that meets my needs. Thanks for letting us know that JDRF is thinking of broadening their much-needed services.